It’s not end-of-life care
Palliative care is not a single treatment or a final stop for patients with serious illness. It is a multidisciplinary approach that brings together physicians from the specialties a patient may need, along with nurses, social workers, chaplains and therapists, to help patients and families manage the physical, emotional and psychological challenges that can accompany a life-changing diagnosis.
At The University of Texas Medical Branch (UTMB Health), Moustafa El Sayed, MD, a palliative care specialist in the Department of Internal Medicine, is working to change misconceptions about the specialty, including the common belief that receiving palliative care means a patient is nearing the end of life.
“Patients of any age can receive palliative care from the first day of a serious illness, alongside curative treatment, and may eventually become well enough to no longer need it,” he said. “It’s absolutely possible to receive palliative care and regain your health.”
El Sayed said people often believe palliative care is the same as hospice, but the two are not the same. Hospice is one form of palliative care, while palliative care can begin much earlier in the course of a serious illness. For example, palliative care can help people living with chronic obstructive pulmonary disease (COPD), advanced kidney disease, dementia, Parkinson’s disease, any many other serious illnesses that affect quality of life.
“We are here to treat any serious illness, not just terminal illness, and whether or not the illness is curable is not a factor in determining whether a patient is eligible to receive palliative care,” he explained. “Palliative care is not limited to patients with cancer . This is another misconception. Any patient at any stage of a disease, even the very beginning, who is struggling with uncontrolled symptoms such as pain, nausea, anxiety, or trouble breathing, is a candidate for palliative care.”
This, he pointed out, is a key difference between palliative and hospice care.
“If a patient is enrolled in hospice, they are no longer seeking life-prolonging treatment. But in palliative care, many patients are still receiving therapy for their disease,” he said.
Treating the whole person
Patients can continue seeking treatment for their disease while receiving palliative care, which is why plans are individualized to each person’s needs. Addressing those needs can involve far more than managing physical symptoms.
“Our goal is to treat all the components of the illness that interfere with the patient’s quality of life, including the social, psychological, and emotional distress that comes with illness,” he said. “We will find the resources patients need, even if they are not part of our team. If a child life specialist is needed, or a speech or physical therapist could support the patient, then we will find those resources.”
Palliative care specialists work closely with physicians across all subspecialties who care for patients with serious illness, including primary care, oncology, cardiology, and pulmonology. Together these teams provide support for many of the symptoms associated with serious illness and the toll they can take on a patient’s physical and emotional well-being.
“When these symptoms become too difficult, then it could be time to reach out to a palliative care specialist,” El Sayed said.
“Among the goals of the care we provide are helping families have difficult conversations about the care a patient is receiving, as well as helping families and healthcare teams communicate and work together to make the best possible decisions for the patient,” he continued. “We are here to facilitate the patient’s wishes, help the family gain clarity, understand the options, and make informed decisions.”
Supporting patients and families
Emotional support is another important part of the specialty, with an emphasis on communication, building trusting relationships with patients and families, and ensuring care reflects the patient’s goals.
“I’m not a therapist, but sometimes the best thing we can do for our patients and families is just listen to them,” he said. “We spend a lot of time together, and they often say just talking openly helps them feel so much better.”
Difficult discussions, including conversations about situations in which the course of an illness or response to treatment is not as positive as hoped, are part of the job.
Palliative care, El Sayed emphasized, is not about giving up. It is about helping people live as fully and comfortably as possible while navigating serious illness, whether they are pursuing aggressive treatment, recovering from an acute illness, or simply trying to regain control of their lives.
“This is not about giving up on treatment and waiting for the end. Many people in palliative care live much longer than if they had not received it, and it just makes sense to address pain or other symptoms while coping with illness,” he said.
For El Sayed, that is the message he wants patients and families to understand: Accepting palliative care does not mean accepting a terminal diagnosis. It means having another layer of support while facing serious illness — and for some patients, getting well enough to eventually move beyond the need for that support.